TBC

So many wonderful things happening in my life, I will hopefully have time to blog about them all today! <3

LUPUS WALK!

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=480495&supId=330757156

CLICK THE LINK TO DONATE!
Super excited about things happening in my life.  Updates soon

FUNdraising

I am so lucky.  Today I got to raise money for two fabulous causes, the Heart Walk and The Lupus Foundation of New England.  I love that I was healthy enough to walk, and that I have amazing friends to support me along this journey.  <3

Weren't you depressed?

Tonight I went to my first Lupus Support group meeting.  Despite leaving home on time, I arrived 20 minutes late because of traffic.  Being a little nervous, I knew that walking into a room of already situated people would be even harder.  Luckily, I had a good friend with me to help ease my nerves and keep my heart light.  
    Upon first scan of the room I noticed that I was most definitely the youngest there.  I was a little apprehensive at first.  The ladies (and one gentlemen) were already seated and finishing up the "light dinner" that was served.  The light dinner consisted of roasted potatoes, asparagus, chicken and some form of red meat with cheesecake for dessert.  Soda, water and coffee were all available. Since I typically try to avoid meat, I snacked on asparagus and potatoes while the meeting got underway.
    Our facilitator began by asking us to go around the room and say our names and what our illness was.  The meeting was not only for lupus patients, but also but arthritis patients.  One by one the ladies took turns and shared not only their names & illness's, but what current symptoms they were facing, or how they were diagnosed.  After listening to about 10-15 stories, it was my turn and I spoke briefly about having lupus for 10 years.  I was a bit nervous and unsure of what to say, so I told the members that they could ask me anything they wanted.  As the group moved on several women began sharing stories of their trials and tribulations.  It was nice to hear another group of women struggling with some of the issues I have dealt with.  Another younger member spoke up and asked me a question directly
 "When you first found out you had Lupus, weren't you depressed?  I was diagnosed a year and a half ago and I'm finding it hard to deal with"  Knowing this was a crucial moment, and my answer could inspire or depress this women further.  I began to answer her question as honestly and as best as I could.  I told her that when I was first diagnosed, I was 14 and didn't fully understand the extent of my illness.  It wasn't until I was older and started researching the disease on my own that I really found out just how serious lupus could be.  When I started learning more and more about my illness, instead of letting it depress me further I allowed lupus to give me a zest for life. I have good and bad days, on the bad days I rest.  On the good days I want to go out and enjoy!  In my response I stated that I also had antiphospholipid antibody syndrome, and had been hospitalized many, many times.  But again, instead of allowing this to bring me down, I am able to see what a blessing LIFE truly is. I really do try and enjoy everyday that I'm NOT sick.  Without lupus I may take life for granted, not realizing how beautiful the little things in life can be.  I was given this disease because I was strong enough to handle it, and I try to remember that when things aren't exactly easy.
When I finished speaking, about 2 minutes had gone by and I feel the members were truly impressed with my wisdom for being so young.  My friend leaned over and whispered "that was beautiful".  Knowing my message had gotten to some, I was relieved.  
The meeting continued long past the scheduled hours.  With the members telling funny stories or sharing one on one.  We said our goodbyes as we had a long drive back home.  I said I would see them all next month, and left feeling a bit better than when I had arrived.  


XoXo,
Jullz

Thank you...NOT

I really love Thank You cards.  Receiving them and sending them.  I think there's something special about receiving a hand written card in the mail about something that occurred recently.  It shows that someone took the time to sit, think about what to write, and personally thank you for it.  In a day where it's so easy to send a text or an email blurbing, THANX!  I really feel there is something unique about a hand-written thank you.  

Now I like sending thank you's when someone has gone out of their way to help me in some way, or has given me a gift. Or if I want to thank someone for something they did.  Now am I sending thank yous to friends who buy me a cup of coffee?  Probably not.  I would rather save it for other occasions so the charm isn't lost.  Opening a card from me, thanking you about something you probably don't remember doing isn't in the best taste. 

That's another thing with thank you's, they don't have to be for close friends only.  Co workers, friends of friends, everyone likes being thanked. It's a great way to let someone know their efforts have been appreciated.  Speaking from a business perspective, someone is more likely to help you in time of need, or work with you again, if you sealed the deal with a personalized thank you.

Their are other events in life where other forms of thank yous may be needed.  You guessed it, parties!  Be it graduation, wedding, any form of shower, birthdays- any function where you received gifts, you should probably send a thank you for it.  I understand that depending on the type of party of was, it may range from close friends ( i.e birthday) to friends of friends, or distant family ( i.e wedding).  Writing a thank you for a gift you didn't love to someone you barely know may pose as difficult, and a little awkward.  A few tips on this, always use their name, try and add something personal about them that you were able to pick up in conversation, (I HOPE you talked to this person attending your event, even if only casually for a short time) and name a few uses for the gift and thank them for it!

A few years ago, my family opened a thank you from a wedding we attended that was neither hand written, nor personal.  It was typed, saying something along the lines about thanking us for our gift and our presence during the wedding.  Imagine my surprise when I learned everyone received the same thank you.  I know writing thank yous to 250 guests can be tiring, but guess what, those guests brought you gifts.  Don't want to write thank yous to that many people? Then don't invite that many people.  Bringing a gift to a wedding is essentially MANDATORY, and so is writing the thank you for it.  Typed & identical thank yous?  That's a NO THANK YOU in my book.

Next, I recently attended a shower, despite not really knowing the person very well. But I attended, helped set-up, laughed, clapped, smiled, took pictures, played games, but most importantly- brought a gift.  A few weeks later I opened " Dear J___Y, thank you for coming to my shower and for all your help.  Thank you for our lovely gift!"  Could this have been any more vague?  This was one hand written, so I do appreciate that.  Maybe I'm expecting too much, but what do you think about this?  I would've tried to write a little more had it been me.  It's not awful and it's not great.  I guess the best way to describe it is that it's just....lacking.

What are your thoughts on this?  Am I a Thank-You-Nazi and need to loosen up a bit?  Or would this be upsetting to you as well?

THANK YOU for reading ;)

XoXo,

Jullz

  

Better days

My last post was way too depressing and I hate complaining like that.  So on a brighter note, Mira should be sent home from the hospital today! I also plan on studying some real estate, possibly working on my resume, and going grocery shopping.  These last 2-3 weeks have been so unbelievably stressful, my diet has gone completely out the window.  I wanted to get back into the swing of healthy eating.

XoXo,
Jullz

APPALLED

Some days are good, others are bad.  Saturday was one of those days that was bad.  After a long day of mourning at my uncles funeral, I got a call that should have been exciting, but after the day I had, I was exhausted.  My sister called to say that she was having contractions.  Now under regular conditions this would be enough to make me jump for joy, but due to the fact that she is carrying twins, and these are signs of a premature labor- I was a little nervous.

I pulled up to Brigham & Womens hospital located in MA.  I asked the valet how do I go about getting my car valed.  He told me the garage was full.  When I asked about handicapped parking, I was told that I could self park my car in a different area.  Not realizing what this entailed, I drove to the area and parked my car. Anxious to see my sister- I quickly parked, took the elevator to the  lobby and began to search for the information desk on which room my sister was located in.  Realizing that I had parked my car in a completely separate area of the hospital, I had a far walk to get to where I needed to be.  But regardless, I began walking to back to the main area of the hospital.

After two security stops and two different elevator changes, I was allowed to visit with my sister. She was well and didn't seem to be in too much pain as the contractions had slowed.  I felt better knowing she and the twins were okay.  It was about 11:00 pm and I decided that I should start heading home after the long day I had.  I asked the nurse on her floor how I go about paying the parking ticket, she was unsure if the garage attendant would be there or not.  I then asked another security guard about parking, he stated that I should be able to pay in the garage.  Headed back to where my car was parked I quickly realized the wrong information was given to me as this area of the hospital was deserted.  I found a lowly security guard and explained to him my situation.  About how I was incapable to walk back to the main area of the hospital to pay my ticket, as I was already exhausted from having to walk it once.  The security guard called over a supervisor from valet parking.  

aaaaaand, to make a long story short, the guy was RUDE to me.  More disrespectful than anybody has ever been in my life.  And I'll tell you why, when he came over to us, he didn't see an old, disabled person with a walker, he saw a young pretty 23 girl capable of walking.  I was treated unfairly and I hope no one is ever treated the way I was treated.  To ensure this, I called his manager to file a complaint as well as the DPPC.  I'm waiting on call backs from both of these places.

BLAH

XoXo,
Jullz

Take a breath reflect on what we've been through

It's truly amazing how much can change in your life, so quickly. Unfortunately due to changes beyond my control, I ended up in the hospital again shortly after my last blog entry.  It started out with a severe nosebleed, and ended up with a blood transfusion.  It was a long 11 days but I am glad to be home.

The hardest part about being in the hospital, isn't actually being in the hospital.   It's coming home.  When you're lying in a hospital bed, its expected that you don't feel well.  Your meals are served to you three times a day, a cleaning crew cleans your room, and there's a little red button you can press in which a magical nurse appears.  But coming home, and being still sick is a whole different story.  Trying to get back into the routine of your normal life is most difficult.
Whether I'm walking up stairs or attempting to do laundry, I am reminded of how weak I am.  These simple tasks were taken for granted prior to getting sick, and now that I have trouble completing them, it is a reminder of what I have been through.

Slowly but surely, I will resort back to my normal life and begin to do the activities that make me happy.  Hanging out with my friends, going to the gym, dancing around to music :)

XoXo,
jullz

Happy Coming to America Day!

I always try to take note of my symptoms in relation to the weather and to what I've been eating.  Meaning if I notice a flare or joint pain after eating certain foods or what the precipitation is- but I never really see a connection.  I currently have a rash on the palm of my left hand and fingertips, and I don't really have an explanation for it.  It's happened before and I'm sure it will go away soon, nothing to be concerned about.  Just more annoying than anything.

So it's February 1st and my family has been living in America for 24 years.  I was still a fetus when they migrated over.  I think my parents did an amazing job of adjusting to a new country and raising a family here. It's also almost been a year since I've been out of the hospital! The first full year since 2006 that I haven't been hospitalized. And my sisters' birthday is approaching on the 23rd.  This month has given me a lot to be thankful and grateful for, God is good!

With all that being said, I would like to make changes in my life this year, which I have already started working on a few projects. I want to stay positive and progressive.  Pray for me, as I do for you.

XoXo,
Jullz

Hello & Welcome

Hello, and welcome to my blog! I've always enjoyed writing about my day, and use to have a another online journal that I updated daily/weekly, so I decided to give it another try.  This will most likely just be a rambling of daily happenings, thoughts, and ideas that I have. Don't expect much. :-)
 I do live my life with lupus...the key word being LIVE, not lupus.  I try to live everyday with the acceptance and understanding my disease, but also knowing that although it is a PART of me, it is NOT me.


With that being said, I'm going to play around with the site to get use to it.  'Till next time!


XoXo,
Jullz